NHS European Office

European reference networks: Europe’s new drive to tackle rare and complex conditions | Elisabetta Zanon

Elisabetta Zanon

An exciting new European initiative is set to capture the imaginations of NHS providers of highly specialised services, promising a wealth of benefits for NHS services, patients and professionals. NHS European Office director Elisabetta Zanon explains how and why. 

Earlier this month, a group of senior NHS clinicians travelled to Lisbon to participate in a European conference where the establishment of European reference networks (ERNs) on rare and complex conditions was discussed. 

The intention with this initiative is to link up leading specialised providers from across Europe so they can pool knowledge and expertise in clinical areas where expertise is rare, and where collaboration at EU level can bring significant added value. 

These networks originate from the EU directive on patients’ rights in cross-border healthcare. Among other things, the directive requires the European Commission to assist with the development of ERNs, based on the voluntary participation of providers of highly specialised services. The idea is to support some of the best specialists from across Europe to join efforts to tackle rare and complex medical conditions that require a concentration of knowledge and resources. 

Participating clinicians will be encouraged to collaborate on a wide range of activities, from improving clinical guidelines and patient pathways, to sharing medical information on clinical cases and agreeing on treatment options, to conducting clinical research and improving medical education and training. 

The expectation is that this cooperation will lead to more evidence-based treatments and increase the speed and scale at which innovation in medical science and health technologies is incorporated into healthcare provision.

While collaboration is already a common feature in the international medical world, what is new with ERNs is that this collaboration will be put on a more formal footing and structured around a defined programme of activities. Importantly, participants will benefit from a joint IT platform, to be made available by the European Commission, which will support the secure and confidential exchange of patient information. It will also facilitate communication and networking activities more generally. 

Another important innovation is that these networks will work as an accreditation system, with participating healthcare providers being awarded a protected logo which certifies them as centres of clinical excellence in a particular clinical domain. To achieve this status, providers will have to document their competence, experience and level of activity, as well as demonstrate evidence of good clinical care and outcomes in their application. 

These networks will therefore be of interest to leading NHS providers of highly specialised services wishing to develop or consolidate peer links with centres of excellence in other parts of Europe, to advance patient care while at the same time furthering their international profile. 

With the NHS being an international leader in research and treatment for rare and complex diseases, there has been significant interest in the opportunities emerging from this initiative recently. This has resulted in my participation in an increasing number of meetings with clinicians and patient organisations to discuss this agenda and the role the NHS could play. 

Importantly, during these discussions consideration has been given to possible synergies between NHS involvement in ERNs and our domestic personalised medicine agenda – in particular the UK’s 100,000 Genomes Project. 

This initiative is already moving the NHS to a new model of diagnosis and treatment based on an understanding of underlying genetic causes and drivers of disease. It could benefit from closer collaborations between NHS genomic centres and state-of-the-art providers of rare disease services in other parts of Europe. 

Patient groups have been very active in promoting the development of ERNs and have been closely associated with discussions on their functioning. This is not surprising, as patients will obviously be the beneficiaries of the improved and more evidence-based treatments the networks will bring. 

Furthermore, in smaller European countries where there is limited or no expertise for the diagnosis and treatment of rare or very complex conditions, patients will also benefit from the transparency the initiative will bring on where to find excellence in highly specialised clinical domains abroad. This in turn will help clinicians in these countries when referring patients for cross-border healthcare, as they will know how and where to find the best clinical expertise. 

As this is a new form of collaboration, there are still a number of challenges to be addressed, such as how to ensure that confidential patient information can be shared safely within the network, or how to put in place an adequate remuneration mechanism for new types of clinical services which may be provided to cross-border patients. 

I have no doubt, however, that these issues can and will be resolved as we move closer to the establishment of these networks and that leading NHS providers will rise to the challenge of this new exciting initiative.

Elisabetta Zanon is director of the NHS European Office, part of the NHS Confederation. Follow the organisation on Twitter @NHSConfed_EU

Find out more about European reference networks

For more information on European reference networks, see the NHS European Office's briefing for NHS organisations or head to the dedicated web pages.

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